Just talked to Dr.Holly Perlman for about an hour.
I kept hoping this all wouldn't happen, but its happening whether I like it or not.
Ruby's info was sent to Stanford today. We are being given a family photo session later this week, taking a little staycation the beginning of next week. Pet scan at Primarys next Wednesday the 6th. Likely leave for California Thursday the 7th. We need this time to figure out who is going to go. Just Mark or I and Ruby? The whole fam? Where do we stay-Ronald McDonald? My sisters (if there are just 2 of us)? 2 weeks? A month? longer? Like planning a vacation you don't want to go on and you know you won't feel well while you're there.
I appreciate Dr Holly's honesty. Her job is not easy.
First of all, remember, Ruby's situation is all unknown. They can't tell us what the overall survival rate is. These -mab drugs are all on trial...this is an experiment, a hopeful experiment. Here is the link if you want to try to translate. We are hoping she'll get Nivolumab. The reason for not doing all other standard options is that for her situation, its not likely to work-such as chemo. The good news is that the side effects of these drugs may not be as bad.
Response is possible, a cure is less likely. Complete response rate is about 10% if I can read my notes correctly. Which means we need to be realistic. This is the part where I silently cried and Mark took over the phone call. I have known since day 1 this is likely. And I am so glad that we know ahead of time, instead of losing her suddenly. But it still sucks. And I really don't like using that word, but its appropriate here. We need to be thinking about how we want to spend our days with Ruby, just in case. I'll also still be praying for a miracle because I believe in them and man, she is so adorable I don't want her to go yet. Getting angry is not an option. It's not worth it.
We have had suggestions to go to St.Jude because they kick in help financially. We have decided against this because we are more likely to be together as a family, and will have a better quality of life, by staying closer to home, and the ocean :) No, I don't know how long she'll be on these drugs, how long we will be away from home, or apart. I don't know how much all this crap is going to cost, but I really don't have the space in my brain to go that far ahead. Life is in day/week increments right now. Sometimes hourly.
I'm sorry that I'm the debby downer with bad news. I'm sorry that we need so much help. I'm sorry dear Ruby that this is part of your life, but we are all beyond grateful that you are part of our lives.
K, I gotta go get some tissues or a roll of paper towels and compose myself before she's up from her nap, Jane is home from the neighbors and Siri gets home from school.
6 comments:
Ali,
My name is Christina Doak and I live on Sunrise Park Drive, right next door to the Austins. Alicia Doyle just told me about you and gave me your blog site. My daughter, Katy, who is now 17, has received treatment at Lucile Packard Children's Hospital for most of her life. She has had a double lung transplant there, and we lived in the area for 8 months while she received oncology treatments after transplant. I'm also from the Bay Area. I know what you are going through is terrifying. Please give me a call. I know the oncology team there and can give you lots of information on what to expect. Katy and I actually leave this coming Saturday (4/2) for her checkups at LPCH next week. My number is 801-824-0438. I have lived in this neighborhood for 15 years. I would love to help.
Warmest thoughts,
Christina
Ali,
My name is Christina Doak and I live on Sunrise Park Drive, right next door to the Austins. Alicia Doyle just told me about you and gave me your blog site. My daughter, Katy, who is now 17, has received treatment at Lucile Packard Children's Hospital for most of her life. She has had a double lung transplant there, and we lived in the area for 8 months while she received oncology treatments after transplant. I'm also from the Bay Area. I know what you are going through is terrifying. Please give me a call. I know the oncology team there and can give you lots of information on what to expect. Katy and I actually leave this coming Saturday (4/2) for her checkups at LPCH next week. My number is 801-824-0438. I have lived in this neighborhood for 15 years. I would love to help.
Warmest thoughts,
Christina
She is adorable. this last picture with the kitty is precious. The heart of our prayers will be your family, Ali. We love you all
we love you so much. our prayers--almost constant--are all about you all, especially sweet Ruby.
Thinking of you constantly.
I am so sorry you have to go through this. I am keeping your sweet family in my prayers. Please if you need anything don't hesitate to call. I'm right down the street so I can be there if you need a sitter or groceries or whatever you might need. Love you guys!
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